What we did and when we did it. Sometimes.

What we did and when we did it. Sometimes. People, places and events to remember.

Saturday, March 31, 2012

Motherhood, Pee and Poop

Note: Don't ever hire me to write headlines for your newspaper. Or blog. Or magazine. It's clearly not my gift.

Being a mom has caused me to spend a not-so-insignificant part of my time and energy thinking about, anticipating, and cleaning up pee and poop. For each of the kids, we kept a chart for the first few weeks, recording every wet and poopy diaper. Sometimes, I think we even designated the amount - little poop, medium poop, and POOPY!!! with lots of exclamation marks.

When Ben first came home from the hospital, we faithfully wrote down each diaper change. (I love the diapers with the stripe that changes color when the baby urinates - brilliant! We didn't have those for Evan and Corrie). After a few days, we noticed that he wasn't peeing as much as he should, and that's when I started panicking about breastfeeding and my supply and whether he was getting enough. Once I started pumping and we started feeding him milk with a syringe, there was pee. Lots of pee. I even wrote a celebratory email to family and friends. "We've been supplementing with pumped breastmilk for a couple of days, and finally we've gotten a good number of wet diapers. I'm so relieved because I was really worried that he would get dehydrated. Praise God for pee!"

After that, Ben was good. Until ... solids.

Sweet Ben has a hard time pooping. I've taken him off cereals entirely (no rice, oatmeal, etc.) because he either vomits or gets really constipated. For now, he is on an a diet of fruits, vegetables, and breastmilk. He eats prunes every day to help keep things moving. Soon we might add in some coconut oil to help him gain some weight.

He hasn't pooped in a day and a half, so I'm hoping that tomorrow will be the day.

But some days, he surprises us. Here's what happened on Wednesday:

When I carried Ben (in his carseat) into the house, I plopped the seat right in front of Emmett. They smiled at each other while I went to unload the car. When I came back, Emmett was groaning ... Ben was happily sitting in an ENORMOUS pile of poop. Ben was holding his feet up by his head and grinning from ear to ear. There was poop on the sides of the carseat, up the back of Ben's onesie, on his legs, on the strap of the carseat ... disgusting.

While Emmett made dinner, I tackled our very poopy son. I cleaned him up then fed him dinner. Then Emmett left to pick up the big kids. Ben and I just hung out in the living room. And he was delightful! He had so much pep and enthusiasm - he rolled front to back and back to front then rolled right and rolled left and grinned and laughed and grabbed his feet. It is the most *fun* I've seen him have in forever. I gave him a bath and he splashed and played and looked at himself in the mirror. He was just a super-happy, fun, big-grinning baby.

It must have felt really good to get all that poop out! :)

Now ... it's Saturday night, and we're waiting on poop. Again.

I feel that I'm working on some complex equation with many variables.

a + b = x - (y + z)

a = food, b = milk, x = desired weight gain, y = vomit, z = constipation. It feels like a balancing act to give him the right combination and amount of food and breastmilk that results in both weight gain and productive bowels.

That's what being a mom is all about, right?

Tuesday, March 20, 2012

World Down Syndrome Day 2012

This is a big day! Today is World Down Syndrome Day. Why March 21st? Down syndrome occurs when there are three copies of the 21st chromosome. 3-21. Get it? :)

I didn't know much at all about Down syndrome before Ben was born. Since then, I have learned a ton! To get the facts about Down syndrome, check out the National Down Syndrome Society. Did you know that there are more than 400,000 individuals with Down syndrome living in the United States? One in every 691 babies born in the United States has Down syndrome. That's a lot!

Down syndrome has also been in the news lately because a couple in Oregon sued their doctor, four years after their daughter was born with Down syndrome. The reason behind their "wrongful birth" court case? They would have terminated the pregnancy if they had known she had Down syndrome. The family won the suit. This makes me incredibly sad.

There are some new prenatal blood tests coming out that can determine Down syndrome in the first trimester. I think receiving an early diagnosis could be such a help in planning; I would probably have done this screening (called MaterniT21) if it had been available when I was pregnant with Ben. I think back on his birth and all the conflicting emotions, and I wonder if I had known beforehand that he had Down syndrome, would the stress of his first few days have been lessened?

However, the concern with this test is that women who receive a positive diagnosis will not receive balanced information about life with Down syndrome. Yes, there are health concerns. Yes, there is cognitive delay. However, there is also great joy and quality of life. If you want to read some excellent commentary on blood testing, please check out Patti's blog. She's just finished up a series of posts about the tests. There are some pictures of some pretty cute kids in there, too! Ben's in this one. :)

One of the main themes for families in the Down syndrome community is "More Alike Than Different." It's been true for us. Ben has more doctor's appointments than my other kids, and he receives physical and speech therapy. Otherwise, his babyhood has been just like theirs.

He sleeps:

He chews on his socks. And toys. And blanket.

He loves his Mama. :)

If you want to see some more cute kids and meet some more fun families, please stop by My Stubborn Miss for a World Down Syndrome Day Link Up. Many of these families and their blogs have been a real encouragement to me.

Oh - and I should give a quick Hallelujah! for the local Down syndrome community! This very night, our family is meeting six other families for a potluck dinner. Hopefully this is just the first of many get-togethers.

Friday, March 16, 2012

Big Sister

Corrie wants so much to HELP - especially with Ben. Today, I let her try her hand at feeding him lunch. Check it out:

Mom: "Do you think Ben needs a LOT of food on the spoon or just a little?"
Corrie carefully puts a small amount on the spoon.

Mom: "How should we feed him each spoonful? Really fast? Slow?"
Corrie: "Carefully."

Ben: "Are you sure this is OK, Mom?"

Ben: "Maybe I could do it myself."

Corrie: "Mom, Ben needs a spoon of his own. He keeps grabbing this one!"

She did a great job. Ben loves hanging out with his big sister.

Wednesday, March 14, 2012

Spring Break and a Date

Yay for Spring Break!

Emmett's parents spent a week with us. They played tons of games with the kids, sat in on therapists' visits and doctors' appointments, babysat so that Emmett and I could go out, and took all the kids to the museum. It was great.

About a month ago, Emmett and I attended a video conference hosted by our church. It was called "Marriage on the Rock," led by Jimmy and Karen Evans. One of the recommendations from the conference was that couples should take a marriage vision retreat once a year. We've never really done that, so we thought this would be a good time to try it. We downloaded the kindle version of this guidebook, and took it with us on our overnight date. Our review: we liked it! The guidebook had some good questions, and definitely sparked some interesting conversation. We spent a lot of time talking about what we value, why God put us together, and what we *hope* our kids are learning. There are a couple of things that we say we value (like living simply), but practically, I don't know if we live it out. Or at least, we don't do it intentionally. :)

We are planning to have a follow-up date sometime, because we didn't get to talk about everything. If anyone wants to borrow the kindle book, I will gladly loan it to you! (I think I can loan it out for 2 weeks at a time).

Here's a quick look at Spring Break:

Papa loves to exercise with babies. :) When my other kids were little, Papa would take it upon himself to teach them whatever was coming up next - peekaboo, rolling, sitting, climbing stairs - whatever. So I had Papa sit in on Ben's PT session, and turned him loose with Ben. Papa helped Ben practice sitting up, crawling position, bearing weight on his legs, reaching, holding his bottle, and probably more.

Here's Ben trying to hold his bottle. Check out that hair!

Corrie is playing with some toys from a Burger King kid's meal. We ate out a lot while the in-laws were here. :)

Evan has played A TON of games this week. This is Pokemon. We've also played Tetris-Link, Hanafuda (highly recommend), Crazy Eights, Battleship, Sorry, Old Maid, Hullabaloo, etc.

Here's Emmett being an awesome dad. Pokemon is a LONG game and I refuse to play it. Emmett, on the other hand, actually bought some of the cards for himself so he can play with Evan. That's love.

We're planning some more fun family stuff for the next few days. Hopefully, I'll remember to take pictures and report back.

Monday, March 5, 2012

The Pendulum

Please tell me other people do this:

Two weeks ago, our family was finally done with birthdays and strep throat. I was so excited to get out of the house that I went a little overboard with the playdate-scheduling. I think we had four playdates in three days. Then we went out to lunch with family friends after church, too.

Last week, I thought, NO playdates. (Well, almost none. We did spend a couple of hours at the park with friends). However, that week, someone in our family had a medical or therapy appointment EVERY day. Monday: I had a pulmonologist appt. Tuesday: Ben saw the geneticist. Wednesday: I had allergy-testing done, plus Ben had a visit from Early Intervention. Thursday: I got a chest x-ray and attempted to take Ben to get blood drawn (the wait was too long). Friday: Corrie had her 4 year well child appt, and Ben received his second flu vaccine. Meanwhile, Evan's soccer season started up again, and Ben and I had two extra speech therapy sessions to watch the Talk Tools DVD.

Our activity level seems to swing on a pendulum. We'll have a week of intense activity, then I'll react by keeping us at home for a week. Or we'll have a period of doctor's visits and I'll counter with park time the week after. I have this vision that our life should be balanced, but it feels more like a see saw. Probably if I looked at a month or a year at a time, it would feel more even. But in the middle of it all, it's hard to see past a few days.

How does your family manage activities? It has been difficult this year to establish a reliable routine. Any advice?

This week (and next week) will be divided between family and doctors. :) My in-laws arrive tomorrow night; we are all excited to see them. Ben and I got the medical visits started by getting our blood drawn this morning. (I'm developing some kind of asthma/allergy so needed a blood test, and Ben needed his thyroid checked). In the next seven days, Ben will see a case manager, physical therapist, cardiologist, early intervention specialist, and speech therapist. All at different appointments!

Note: I should say that we are very thankful for the therapists and doctors that Ben sees. He's received excellent care and lots of support and encouragement so far. Normally, we don't have quite so many visits in a row!

Anyway, I haven't posted much because we've been in the thick of things. And I haven't taken many pictures lately for the same reason. Here's one of Corrie after we had a special Burger King lunch. I don't know about other kids, but the crowns really appeal to my princess-loving girl. :)